Has anyone been deliberately misdiagnosed? Had to deal with a vindictive provider? Been ignored when you complained? Know where to get help?

Roxy; I have a suggestion that perhaps you haven't tried; please hear me out.

Have you considered talking to a psychiatrist, preferably one with geriatric experience?

I ask this NOT because I think that you're mentally ill, but because in my experience, Geri Psychs are the last specialty out there who actually take into account the WHOLE patient, body, mind and soul.

Just as I would not accept an NP's diagnosis of a serious neurological disease, I would not accept that dx of depression from anyone other than a psychiatrist.

Do you have the means to travel to a nearby city to get better, more objective medical care?

Is there a reason you didn't go to a new doctor when you first noticed these things about your current NP?

It's always okay to get a second opinion.

Oh yes and how. Most recently, I was assigned a new PCP as my doctor had left the practice. She absolutely insisted that I MUST have diabetes (because I am overweight). There was nothing in my chart to indicate this and I have no symptoms. She insisted on testing for it. Guess what. Not even pre-diabetic.

Years ago I was mis-diagnosed when presenting classic symptoms of MS. I was told that it was my weight (the go-to my whole life, and I am not even close to being THAT fat). I was also told that, since I cried in her office over having felt terrible for months with no real diagnosis other than "lose weight", she said "that's it! You're depressed"! and gleefully wrote me a prescription for antidepressants. After further months of nothing changing, I was finally referred to a neurologist for some of my symptoms. One MRI later and I got my diagnosis. I'm still fat 17 years later but I feel pretty good since I am receiving proper treatment.

If you are not happy with your MD or NP do change. I cannot myself imagine why a medical practioner would purposely set out against a patient, but mistakes can be made, so do change until you find someone you feel is a good advocate for you. Wishing you good luck.

Let me offer some insight into the so-called privacy of medical records.

In preparation for cataract surgery, I was told to complete, online, medical records for the surgery center.   I decided to explore the privacy issue, even though I don't as a matter of course provide that information online, as I have already prepared med histories which I take for medical appointments.

This was the first time that data entry directly into an online portal was mandated; in the past I've just refused and it hasn't been an issue b/c as noted I have my own prepped records.

The portal identified the entity managing the portal for the medical records uploaded, and required an indemnification, hold harmless and defend acknowledgement by me before I could even enter the portal.   Obviously I refused.

There's no way I'm going to agree to defend an entity that's merely hosting records.    I've negotiated indemnification clauses and know the liability they create, with "defend" being the operative word that could easily bankrupt anyone who is forced into defense of a lawsuit.

I did research as well on the "guardian" of the records, the company that stored the uploaded records, learning that 2 of the members of the company are venture capitalists.   Big red flag.  

I researched the venture capitalists' own company, learned that it deals with medical information, leveraging it, and providing "SOLUTIONS" to individuals (and med practitioners)  for various nice sounding goals.   NO medical personnel were in management or ownership positions of this company.    Bigger red flag.

There were also references to "data silos" and other tech references in terms of access to medical data.    

I contacted my surgeon's office and advised that I refused to sign the pre-operative medical records release required to upload data.   One of the surgery boarders agreed to fax my medical history  to the surgery center.    Problem solved.


But it was raised again by surgery staff on the date of the surgery; I again refused.  The operation was almost cancelled while we politely dueled over the issue, with an understanding physician agreeing that I was justified in my concern.  Although it wasn't a solution, he noted my position in the records.   

Unfortunately, I had/have no control over the surgery center itself's action in uploading the records faxed by my surgeon's office to the same venture capitalists' cloud storage.

For the next surgery, I wrote a letter stating my position and asked that it be included in their files.       I still have no control over the data once the Surgery Center uploads it, and in researching T & C, I could find none by which the cloud storage company agreed to be bound by HIPAA.

And I realized where robocallers might be  getting their information that I might be in a population group that needs medical devices, or this or that that affects people in my age group.  


Anyone who thinks that your medical records are safe needs to put on a Sherlock Holmes hat and do some sleuthing.   Do you really think that hospitals maintain all their own records?  That they have the funds, staff and technology to maintain cloud hosting?    It's contracted to cloud hosting companies.    And who owns those?   Have you ever researched that?  

Do some investigating to find out what company really manages cloud storage of your  medical practitioners' medical records, then research those companies, if you can actually get the name of the cloud host from your practitioners. 

If you think the HIPPA provisions protect your data, ask yourself this, or ask it of your med providers:

1.    Does the cloud host company sign an agreement with med providers to abide by HIPAA?  
2.    If not, why not, and
3.    If not, what protection is provided by the host company of your medical records?
4.    Or ask your medical provider to provide you with the documentation it signs with a cloud host. I doubt that any medical office/hospital would give that to you.

Rovana,

I think you've "hit the nail on the head."   Most people are NOT familiar with indemnifications clauses and how volatile they can be in a situation in which someone is notified that he/she has to defend based on such a clause.  

I don't think I did either until I became heavily involved with contracts.

Roxyann,

I don't know what to suggest other than try to move to a more populous community, but that's obviously not something that's easy to accomplish.    If I recall correctly, I read somewhere that you're in a mountainous climate, with probably limited medical facilities and not the best at that.   

I wish I could be of more help, but I don't know how I can.    When I've run across poor medical treatment I have the option of many other practices in the same field of medicine, but that's not the case in a mountain community where there are probably limited choices.

Do you have any family outside the area with which you could stay for awhile?

I'm not going to get into the issue of the misdiagnosis but just want to point out one aspect:  the use of "deliberate" in diagnostic terms.

Deliberate in legal terms infers intentional, and/or premeditated.    You may conclude that this occurred, but what proof do you have?  

That's something to consider if you decide to take action against the doctors.    You could already be bordering on slanderous charges if you go public on these issues, including involving state Boards.

I apologize if my long post below sounds strident and angry; it becomes so whenever I consider the issues and the potentially exploitive but valuable effect of medical records to those with access, but not directly connected to or providing services to the patient.

Garden, I have copied and pasted your post to a document. This was very interesting. We really have no control over how our provider saves our info. Like I said, our Big hospitals share their info with their satellite providers and visa versa. But we shouldn't, and our providers either, be putting our private medical info out there.

Scary that we have no control over what's in our chart.   I have a family member in a nursing home on Medicaid.  She's always been a little goofy, but nursing home is attributing that to dementia.  I have tried telling them what they are describing is pretty much her mental baseline, but they look at me like I'm nuts.  I think she is  probably a lifelong undiagnosed ADHD and that's what they are calling dementia.  Essentially, physical problems and incontinence are why she's in a facility.  Would be nice to have an honest discussion about other living options for her (I do realize there may not be any) but with all this documentation about dementia, trouble learning new things, poor hygiene, etc who would ever see my side of it?